Snapshots of Dementia: 1 Corinthians 13 for Dementia Caregivers
(Photo by Fadi Xd on Unsplash) Note: My favorite (and only) niece was married this past weekend in a lovely ceremony that included a reading from 1 Corinthians 13. Thinking back on our wedding, where that same passage was read, moved me to write the following paraphrase specifically for caregivers of those living with dementia (“person LWD” in the paraphrase below). If I know all about dementia and can discuss my person LWD’s situation, but do not have love, I become a voice my person LWD would rather not hear. If I’ve done all sorts of research and understand what my person LWD and I are facing, and if I have faith to believe God can change it all, but do not have love, it matters not. And if I make all sorts of sacrifices, changing my work, adjusting my priorities, and rearranging my schedule on behalf of my person LWD, but do not have love, I haven’t helped anyone in any way. Love is patient when my person LWD forgets what I’ve said only moments before. Love is kind when my person LWD does something that will cause me extra work. Love is not jealous of the extra attention my person LWD receives from family or friends. Love does not brag about what a great job I’m doing as a caregiver; instead, love recognizes and affirms both my personal imperfections and my prayerful dependence on God. Love does not speak to the person LWD in private in ways it would not want known in public; it does not manipulate situations toward its own selfish outcome; it stays calm when the person LWD becomes agitated; it does not keep a mental list of how much it has sacrificed and how many times it has served. Love does not rejoice when others do things it considers wrong or inappropriate in relating to the person LWD; instead, it takes delight when more people appreciate the person LWD and want to build a relationship with that person. Love preserves the dignity of the person LWD; it never stops believing and hoping for the best while enduring even the worst of situations. Love never fails the person LWD. After all, any special insights and learning about dementia will one day disappear, as will the distinctions between those LWD and those not. Like the person LWD, we have only a partial understanding of the mystery that is the mind. But one day, all of our earthly concerns will fall away, and God will restore everything lost or broken. Long ago, my person LWD set aside their childish ways. But today, more and more, they are speaking, thinking, and reasoning like a child. Today; I understand only a tiny part of what my person LWD is experiencing; one day, I will have full understanding—and so will they. So many elements are fading from my person LWD’s life; faith, hope, and love remain; these three. Yet in every situation we encounter—past, present, and future—the greatest is love. —1 Corinthians 13:1-12, author’s paraphrase for those caring for someone...
read moreSnapshots of Dementia: Control Freak
(Wikimedia Commons) I remember the day when I knew I had to make a change in my parenting style. I don’t know that I heard an audible voice, but as I moved from the pantry to the table to count out the animal crackers for my children, God spoke: Stop trying to control everything. I’m not sure what I was afraid would happen if I didn’t count out the treats—that the kids would eat too many? That we’d run out too quickly?—but that day, I stopped. I poured the animal crackers into their little bowls (or onto their little napkins; I honestly don’t remember). Maybe one bowl had more than the other. Maybe it didn’t. But from that moment on, I stopped counting. And controlling. God’s animal cracker instruction served me well as my children matured, because throughout that process, I could control less and less: Their rate of growth. Their emotions. Their likes and dislikes. And ultimately, their choices about their lives. The realization that I could control little and shouldn’t control much saved our entire family a lot of stress. I learned to, as a friend puts it, go with the flow of the Holy Spirit. And although our family remained imperfect, I believe we were all much healthier and happier as a result. So tonight, when Tom once again went to bed at 9 p.m., exhausted from trying to function with huge gaps in his thinking, I found myself cleaning, just as I sometimes did when my kids were small and he was out on pastoral visits. For a busy woman, there’s something near-magical about a quiet house with no dishes in the sink, no mess on the counter, and no crumbs on the floor. But then I realized the source of my satisfaction: control. In our dementia journey, I have little control over lots of things. I can’t control: — How many times Tom will interrupt my work to ask for help with his word games; tell me meandering stories about his online golf game; or have me find his glasses, coffee mug, or remote. — How long he’ll use a walker or if that walker will someday become a wheelchair. — If he’ll get to play with our coming grandchildren as he has with Lincoln. — If he’ll remember how to make his coffee tomorrow (he’s forgotten a couple of times in the last few weeks). — If he’ll make it through a full church service this weekend (we’ve had to leave early the last two Sundays). — How long he’ll be able to take his own shower and dress himself, both of which he does with increasingly less skill. — If his words will continue to slow down until he loses them completely. — If he’ll remain at home always or need more care than I can someday supply. — If he’ll always remember our children. — If he’ll always remember me. I can’t control any of those things or a hundred more that cross my mind nearly every day. And so I clean. And think. And pray. And as I spend another hour or two alone before I, too, go to bed, I realize again that it’s not wrong to take control over these small areas any more than...
read moreSnapshots of Dementia: Choose Your Battles
(Photo by syklimkin on Unsplash) Choose your battles. It’s a familiar parenting principle—and one that works well for many aspects of life. Sometimes it takes a slight twist: Don’t sweat the small stuff. Look at the big picture. Don’t miss the forest for the trees. But however we say it, we mean to avoid turning small issues into big ones, which often happens when we argue or fuss. I’m not much of an arguer (Read: If there were an anti-confrontation vaccine, I’d be first in line.) But there was a time earlier in Tom’s dementia journey that, for some reason, I found it important to let him know when he was doing something I considered wrong or inappropriate. Part of that reason was that he had not yet been diagnosed. Although I suspected problems over a period of years, his first neurologist as well as a neuropsychologist told me he was fine. So when he did something that upset me or had odd, unusual behavior, I talked to him. Sometimes I corrected him. Sometimes I told him he was wrong. In reality, since he couldn’t control most of his actions or impulses, I was the one who was wrong. I thought my words would help Tom make some different decisions about what he said and did, but of course he couldn’t think logically anymore even if he remembered my comments. Today, armed with a new knowledge set as well as his dementia diagnosis, I approach these situations much differently. BEHAVIOR: Tom doesn’t answer me when I ask him a direct question. THEN: “When someone asks you a question, you should respond,” I remind him. “It’s how people know you’re listening to what they say.” NOW: I repeat my question after a few minutes or drop it altogether. Concentrating takes so much cognitive effort that he can’t focus on more than one thing. He genuinely does not hear me. And these days, he is less and less able to process enough information to give a response. I didn’t understand that then, but I do now. BEHAVIOR: Tom flirts with the female grocery store clerk, a practice I’ve asked him to stop. THEN: I don’t say anything to him at the store, but afterward, I tell him he has hurt me. I also spend time grieving over the state of my marriage. NOW: I either use the self-checkout line and let him “help” me with the groceries (our bags contain some rather interesting combinations) so we generally avoid such encounters. If we go through a regular line, I try to do most of the talking. If flirting happens, I ignore it (although if it ever became inappropriate, I would shut it down and explain to the clerk about dementia). BEHAVIOR: Although he can no longer drive, Tom acts as though he’s still in charge of our car, telling me where to stop or turn, gesturing (not in anger) to other drivers, and obsessing about our miles per gallon. THEN: Even when you know your backseat driver has dementia, this can be frustrating. I don’t argue with Tom, but I do ask him to stop acting as though he were the driver. “I’ve got it,” I say. P.S. That doesn’t work. NOW: I ignore his backseat driving as much as possible. He can’t drive because...
read moreSnapshots of Dementia: ‘I Can’t Care’
Photo Credit: Peter Conrad, Unsplash Although I’ve written about many painful parts of our dementia journey as well as some positive ones, I want to discuss a primary dementia symptom/sign that I’ve mentioned only in passing. If I had understood how big a role it plays in many types of dementia, I would have pushed for a diagnosis sooner and harder than I did. This known-but-unrecognized symptom? Apathy. If I had known about this close connection earlier, I would have realized that many of the following were not just abnormal, often hurtful actions but signs of something dangerous happening in Tom’s brain. All of these became part of our lives at least two years before Tom was officially diagnosed with dementia in the fall of 2019. — Withdrawal from friends: Always the life of the party who would keep talking to people long after I was worn out, Tom now waited for others to take the lead in group settings and often wanted to leave early. — Lost celebrations: He did less and less, sometimes nothing at all, to recognize birthdays, anniversaries, or other special days—a big change from the person who would find the most random of reasons to celebrate. — Lack of compassion: Previously an expressive personality, Tom displayed a flat affect/expressionless face even when he knew he had hurt someone (usually me) deeply. Prior to his diagnosis, we met with marriage counselors for nearly a year. At one point, they suspended our sessions because of this type of behavior and the fact that, even when they called him out on it, nothing changed. — Withdrawal from family: For a few years, Tom refused to travel with me to visit my widowed mother, saying he couldn’t take time off work. Later, he refused to attend a baby shower for our expected first grandchild for the same reason. Later, he came to see our newborn grandson for the first time only when I insisted he make the trip. — Lack of interest in his health: Tom stopped seeing the dentist several years before diagnosis and only went to the doctor when I insisted he go. He never seemed interested in what we were finding (or not finding) out about his potential dementia. It almost seemed as though this were all my problem, not his—which is what he told the neurologist who diagnosed him. Tom’s apathy showed up in other ways, but these are some of the bigger areas I noticed. In this video, dementia expert Teepa Snow explains some of the reasons behind the apathy associated with vascular and other types of dementia, including the frontotemporal variant Tom has. She says it’s not that the person with dementia doesn’t care anymore—it’s that they can’t care. The part of their brain that allows them to care about things doesn’t work anymore. In Tom’s case, his apathy now shows up in areas such as: — Clothing: He’s never had much interest in fashion, but he would now wear the same sleep shorts and undershirt all day, every day if I didn’t encourage him to get dressed. — Personal Hygiene: He often goes a few days without shaving, something he rarely missed in the past, and if I don’t urge him to shower, he won’t. — Activities: Some days, even activities he...
read moreSnapshots of Dementia: Significant Tasks
Tom singing at a nursing home, July 2022 A big part of my writing life has come through my relationship with Dr. Walker Moore of Back 40 Ministries. He and I have collaborated on three books and worked together in both his former and his current ministry as well as on the mission field. I’ve also edited his weekly column in the Oklahoma Baptist Messenger for a number of years, and we’ve shared in other publishing projects as well. One of my favorite teachings in our book Rite of Passage Parenting and its companion workbook is the concept of a significant task: a special assignment that demonstrates an individual’s worth to the people who are important to them. For a four-year-old, a significant task might be emptying the wastebaskets or helping sort laundry. For a fifteen-year-old, a significant task might be changing the oil in the car or taking responsibility for a part of the family budget. Those who don’t have significant tasks often look for significance elsewhere—often in inappropriate ways and places. I realized not long after Tom’s official diagnosis that one of the wounds for people living with dementia comes from the loss of their significant tasks. Near the end of 2018, Tom experienced the loss of his worship pastor job followed by the loss of the ability to hold a job at all. Within a few months, our family also asked him to stop driving—another loss of a significant task. And before all this, when he secretly gave away thousands of dollars to online scammers, I took over our finances and removed yet another significant task. I didn’t want to manage everything, and my personality is by no means controlling. But Tom’s dementia has meant I have no choice but to be in charge of our significant tasks. So how can he still know he has value and purpose? My solution has been to let Tom be as responsible as he is able as long as he is able. These are his primary significant tasks: — Coffee Service: Tom loves coffee; I do not, so he’s almost always made the coffee in our home. Before we sold our Florida house, our son had to repair a warped kitchen drawer because Tom had forgotten to put the carafe under the coffeemaker so many times. A few years ago, our wise children gave him a coffeemaker that dispenses only a cup at a time. Tom still has frequent spills (yesterday’s soaked two bath towels plus), and I often find him reading the instruction sheet for the coffeemaker over and over. I’ve started helping him more, but I want him to keep this task as long as he can because it means so much to him. — Water Delivery: I don’t drink coffee, but I do drink at least one large travel mug of hot water or hot tea every day. When we moved to South Carolina and I went back to working from home, I asked Tom if he would bring the water to me at my desk. He can still perform this task, although he almost always forgets for a few hours. I try to let him remember on his own and always thank him. If he keeps having trouble with coffee spills, this task will have to change as well. — Trash and Recycling: Tom still wheels our trash to...
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I've asked God to use my writing and speaking to count for eternity. I'm passionate about relationships and creativity.
